Today I don't write a letter to Samantha. I just write. I love this picture of her. It makes me smile. Of course her hand is right at her mouth for continual chewing. And she's mid-shriek. Love this girl.
Last week I was at Girls Camp -- teenage girls from our church. It was fun. But I did feel apprehensive about leaving and having no reception on my phone. Marcus did amazingly well though -- first time taking Sammy to therapies and even a neurologist appointment. Go Daddy! He got a little lost, but figured it out.
I sent Marcus to the neurology appointment equipped with questions. I was expecting life altering answers. But much to my surprise, there weren't any. It was pretty simple.
Seckel Syndrome -- Yes there's a genetic test for it, but there's no need to get it done (well, that's to be determined by me...the mama...but for now I'm fine with that). The diagnosis of Seckel Syndrome is actually a way of grouping all the symptoms she has -- and she has them all. So, she has Seckel Syndrome, I suppose, but it doesn't matter? I guess not. And it doesn't change anything about the treatment she is getting, her prognosis, nada. So, that wiped out about 1,000,000 questions I had. Pretty easy.
In recently reading Samantha's past neurology report, I read something I hadn't noticed before. Sammy's head is so small, she's actually considered nanocephalic. Tonight, at the dinner table, this came up. And, her Uncle Colin said it this way, "So, in layman terms, instead of having a super small head, she has a super duper small head." Yep. Our little Sammy is super duper small. And I'm really ok with that. She may have a nano-head, but she has a macro-heart. Such a sweetie (and I can say this now because she's asleep...because believe me...today, as she threw up all over me 2 times, then all over the kitchen floor one more...I wasn't thinking "sweetie pie," though I did feel bad for her).
There are days when I feel like a diagnosis is so important -- like it somehow makes things make sense. She's this way because of this gene...or she does that because of this. But honestly, most days, it doesn't matter what she has. She's my little girl no matter what, right? That doesn't change. She'll always be my little baby girl.